Parkinson’s disease affects everyone differently. While tremor is often one of the most recognizable symptoms, the early signs of Parkinson’s can be subtle, and the road to a diagnosis is often not straightforward. For Jane Pinho, that road lasted nearly two years. She shares her story in the hope that others living with Parkinson’s feel more empowered to navigate their own journey.
When Jane first noticed something was changing, Parkinson’s wasn’t on her mind.
Looking back, she now recognizes her symptoms were early signs of Parkinson’s, but at the time they seemed easy to explain away. It wasn’t until she started experiencing a tremor in her pinky that she realized something more might be happening.
“At that point, I just wanted someone to tell me what was wrong so I could move on,” Jane said. “I’ve always been someone who moves through challenges. I knew there was something wrong, and I just had to keep looking.”
Over the next two years, Jane met with multiple healthcare providers, searching for answers. While each appointment uncovered another piece of the puzzle, she often left feeling that she still wasn’t being heard. Rather than giving up, she continued asking questions and seeking additional opinions.
More than the Diagnosis, Finding a Care Partner
Jane’s Parkinson’s diagnosis didn’t immediately bring her clarity. Instead, it raised a new set of questions.
She left the clinic with little understanding of what Parkinson’s disease was, what living with it might look like, or what might come next. Even after confirming the diagnosis through a second opinion, Jane still didn’t feel equipped to understand what Parkinson’s might mean for her or how to chart her life going forward.
“I had no tools in my toolbox,” Jane recalled. “I just left one appointment after another thinking, ‘What do I do now?'”
These experiences changed what she began searching for.
“The one thing I said to every doctor was that I was looking for a partner,” she noted. “I needed somebody who would join me on this journey with Parkinson’s.”
Eventually, she found a doctor who acted like that partner, and soon, this physician was helping Jane learn how to manage the disease, navigate life, and explore potential treatments for Parkinson’s.
Finding the Strength to Persevere
“My journey is like waves,” Jane said. “I’m riding the wave, and for a time everything is going okay. Then all of a sudden I get knocked down. I have to get back up.”
For Jane, resilience has always meant choosing to keep moving forward.
“I don’t want Parkinson’s,” she said with determination. “I hate Parkinson’s. But then I wake up and remind myself, I’m still alive. I can still do things. I still have to fight.”
Jane had a role model in her grandmother, who was a “person who suffered a lot of tragedy in her life, but just overcame and kept not allowing obstacles to get in her way, and she persevered.”
One of the biggest lessons Jane has learned is that Parkinson’s should not be faced alone. By connecting with others living with Parkinson’s, Jane learned that no two people experience the disease the same way. While there are shared challenges, every person’s symptoms, progression, and daily experiences are unique. Jane affirmed, “It’s almost indescribable the feeling I have and the fulfillment I receive when I am part of the community. So many can benefit from being with others experiencing this disease.”
“I’ve heard it called it a snowflake disease,” Jane said. “Everyone’s Parkinson’s is different. Don’t look at me and think your journey is going to look exactly like mine.”
Hope Comes from Research Progress
“I’m still looking for better treatment,” Jane said. “I’m still looking for the cure. I’m still looking to stop the progression because I want to move on. I’ve been a runner; I want to get back to running.”
For Jane, that hope is rooted in research.
“Where would we be without research?” she said.
She believes every researcher and every person who chooses to participate in research plays an important role in moving the field forward. She also hopes that continued innovation will bring new possibilities for people living with Parkinson’s disease.
Toward the end of her interview, Jane reflected on what meaningful progress would look like from her perspective.
“Stopping the progression of the disease,” she said. “Being able to just freeze time and live. That’s my hope. I just want it to happen now, as soon as possible.”
Looking toward the future of Parkinson’s research
Today, researchers are studying a wide range of approaches to better understand Parkinson’s disease and develop potential new treatments, including newer versions of traditional medications, cell therapy, gene therapy, and other innovative approaches. These new modalities may offer patients a chance of symptom relief, improvements in their quality of life, and a slowing or even a halt of disease symptoms.
One area of active research is cell therapy, which is being investigated in clinical trials for its ability to potentially replace the dopamine-producing cells that are lost due to the disease.
Jane’s Advice for Someone Newly Diagnosed
After everything she’s experienced, Jane’s advice for someone newly diagnosed is simple: you’re not alone.
She encourages people to learn about Parkinson’s disease from trusted sources, ask questions and remember that no two journeys are exactly alike.
One resource that was instrumental in Jane’s own journey is the Michael J. Fox Foundation for Parkinson’s Research. Through its educational resources, research updates, and community members, she found information, hope and a connection to others navigating similar experiences.
She also encourages people to connect with others living with Parkinson’s and learn as much as you can because becoming informed is an important part of becoming your own advocate. Above all, Jane hopes people remember that while Parkinson’s may become part of their story, it doesn’t define who they are.
“There will be hard days,” she said. “There will be good days. Just keep going. Keep riding the wave.”
